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Patients and the public give views on use of patient data in research

UCLH patients shared their views on how patient data should be used for research at the BRC’s sold-out event Your data, our challenge which was streamed across UCLH and UCL.

And they questioned representatives from medicine, academia, the NHS and the pharmaceutical industry on how to ensure data is kept safe and who should have access to it.

Event attendees heard from UCLH’s Dr Gill Gaskin (Medical Director, Digital Healthcare) who said that in the past, data was a report on the past, but now it should become a predictor of the future.

John Whittaker of pharmaceutical company GlaxoSmithKline said allowing industry to access to data sped up the development of new medicines.

Some patients questioned why data needs to be shared with the private sector, asking whether data could be analysed while remaining within the NHS. NHS Digital’s Professor Daniel Ray said that while data sharing can have huge benefits, patients and the public must retain a degree of control over their data.

And Dr Hamish Tomlinson of artificial intelligence company BenevolentAI and Dr Maxine Mackintosh of the Alan Turing Institute and UCL Institute of Health Informatics said data analysed by researchers needs to be representative of all of society – to ensure insights gathered apply to all groups.

The event – facilitated by founding chair of the Health Research Authority Professor Sir Jonathan Montgomery – was the first in a series which will involve patients and the public in discussions on how UCLH manages and shares data. Events will run until mid-2020.

Due to high demand for tickets, which sold out within a few days of release, the event was livestreamed within the UCH Education Centre, the UCL Institute of Education and the UCL Institute of Health Informatics. It can be watched on the UCL Youtube page.

Details of further events will be announced on the BRC webpage for the initiative.